Guest post by Stephanie O’Donohue, Content and Engagement Manager for Patient Safety Learning
I’ve worked in health and social care for over 15 years but when I joined the charity Patient Safety Learning I was shocked to discover there are 11,000 preventable deaths each year in the UK, due to unsafe care. And deaths of course are not the only measure of harm. Unsafe care can also leave patients with chronic pain, psychological trauma, permanent damage and life-limiting repercussions.
Like many others working to improve patient safety, I’ve grown increasingly frustrated at the recurring themes: The lost opportunities to learn from mistakes. The unsafe staffing levels. The culture of fear that can prevent healthcare workers from speaking up when they have a safety concern. Despite countless barriers, the patients, partners and colleagues I work with remain determined and they are a continual source of inspiration to me.
This year we’ve seen the publication of two significant inquiry reports: Paterson Inquiry report and the First Do No Harm report (The Cumberlege Review). Both reports include evidence of women who were harmed when accessing healthcare and highlight a number of significant patient safety failings. They also illustrate a shameful disregard for the voice and rights of the women involved.
In this blog, I’ll be reflecting on the findings of these reports and other evidence, to discuss some of the patient safety issues that specifically impact on women.
Consent is an important part of ensuring patient safety, and healthcare providers must make sure that they obtain it lawfully. Genuinely informed patients will be made aware of the benefits, risks, alternatives, and the potential impact of choosing to do nothing. The absence of this information can have devastating consequences, as illustrated by the cases of the women who, unknowingly, had surgical mesh put inside their bodies. For some, this led to life-changing complications.
At Patient Safety Learning, we have seen concerns similar to those raised in the First Do No Harm report reflected elsewhere. There are pages and pages of testimonials on the hub community forum from women who have experienced very painful and traumatic hysteroscopy procedures. Many did not feel they had been given adequate risk-based information to make an informed choice. Some were given no choice at all.
The impact of not being fully informed as a patient can cause long-lasting psychological harm, particularly when there are adverse outcomes. In addition to physical damage, many of the women involved in the Cumberlege Review and the Paterson Inquiry, were left feeling violated and traumatised by their experiences. Some have also had to come to terms with the horrendous realisation that the harm was deliberate.
Unfortunately, we are hearing time and time again that women, even when they have suffered preventable harm, are being dismissed, disbelieved and shut out. The patient groups associated with the Cumberlege Review spent decades seeking recognition and change so that other women would not from suffer as they had. Their insight was key to
improving patient safety and yet they were continually pushed aside.
Refusal to listen and learn from harmed patients and those with lived-experience is not only dangerous but it can also have further detrimental impact on the wellbeing of those fighting for justice. At Patient Safety Learning, we are working with others to understand how harmed patients can be heard and appropriately supported. If no one is listening and learning from these women and their experiences, it is likely that others will suffer in the same way. We all
need to make sure that doesn’t happen. As Julia Cumberlege said in her Review, patients should not be left to “join up the dots of patient safety”.
We have also seen widespread concerns regarding the way women are treated when accessing healthcare more generally. It’s important that we understand how individual bias could be having a negative impact on women’s health outcomes. Some feel their physical health concerns are too often dismissed or attributed to psychological factors without further investigation. There is evidence, for example, that women who go to A&E are less likely than men to be given adequate pain relief and more likely to be given anti-anxiety drugs.
It is also important to understand the wider system biases that exist. Historically, a lot of medical research focused on the male body or only on the implications of gender within women’s reproductive health. This has serious safety implications and we need to not only ensure this is rectified moving forward, but also that we are aware of the gaps this has presented to date. Research has shown, for example, that women are more likely to die from cardiac arrest than men. This is partly due to a poorer understanding of how symptoms present in the female body but there is also evidence that women receive poorer standards of cardiac care.
With no male comparisons, it can be difficult to evidence whether gender bias towards women exists in female-dominated areas of healthcare. However, we cannot ignore the recurring safety issues within maternity services and the high rates of litigation within obstetrics and gynaecology. The scandals that emerged from Morecambe Bay 10 and Shrewsbury and Telford highlight the devastating consequences that unsafe cultures and systems can have on women. In response to recurrent failings and ongoing concerns in maternity services, MPs have recently launched an inquiry. It will explore what action is needed to establish a safer culture and the extent to which a “blame culture” affects medical advice and decision-making.
Working for Patient Safety Learning, I have met with many incredible midwives and patients who are determined to improve maternity safety. It is important that they are supported to do this and that there is a willingness among leaders to listen and respond to concerns raised. Where maternity investigations have found serious failings, there needs to be an open and honest culture for learning to take place and for women to be better protected from harm moving forward.
Racial bias in maternity services
The need to better understand racial bias in maternity services is becoming increasingly recognised. Much of this work has rightly focused on the biases that are negatively impacting the safety of Black women; in the UK, Black women are five times more likely than white women to die during pregnancy or childbirth. There are concerns, for example, that cultural assumptions around the ‘strong black woman’ are adversely affecting their birth experience, particularly in relation to inadequate pain relief and preventable suffering.
In a recent interview for Patient Safety Learning, Sandra Igwe, Founder of the Motherhood Group, told us that many Black women have a fundamental distrust in maternity services and the healthcare system more broadly. She highlighted the belief among some, that it is a ‘white system for white people’ and how this could be preventing Black women from accessing or engaging with maternity services. Diversity and inclusion are vital in all areas of healthcare to ensure true representation of all women in our communities.
My research into how gender can impact patient safety has amplified my frustration and determination in equal measure. Perhaps it’s because, as I read through the reports, testimonials and data and talk to patients, I can’t help but help but recognise elements of my own healthcare experiences. And in doing so, I realise that I too have felt dismissed. I too have felt unsafe.
Much of the harm experienced by women in healthcare seems to be connected to bias, lack of informed consent or an absence of patient engagement. The good news is that there is huge scope to improve on these areas and reduce harm. If we can work together, with the right levels of respect, candour, and willingness to learn from past events, we can make sure women receive the safe care they deserve.
Join our patient safety community
At Patient Safety Learning we are working with patients, healthcare staff and organisations to share learning so that we can understand where the barriers to safe care exist. We’ve set up an online platform, the hub, that’s free for anyone to join. Our members are able to access thousands of resources on patient safety (including women’s health), start conversations in the community forum, submit blogs and receive early invitations to events. You can share your personal experiences on the hub to help highlight good practice as well as areas of care that need improving. We continue to champion improvements to women’s healthcare and would be interested to hear from anyone who feels their gender or identity has impacted their safety as a patient.
You can find Stephanie on Twitter